Date of Award

12-2013

Degree Type

Dissertation

Degree Name

Doctor of Philosophy

Major

Nursing

Major Professor

Mary E. Gunther

Committee Members

Joanne Hall, Sandra Mixer, Mary Ziegler

Abstract

Significance. The Joint Commission established standards to evaluate comprehensive end-of-life infant care and the positive outcomes of such care are well documented. However, findings from multiple studies conducted over the last decade indicate that end-of-life care in the neonatal intensive care unit is not provided consistently or holistically to all dying infants. Because nurses are the healthcare professionals most often responsible for providing this care, anything that detracts from their ability to provide it, including their own affective responses, needs to be addressed.

Aim. The purpose of this study was to explore—through lived and told stories—the affective, interactional, and meaning-related responses that NICU nurses have while caring for dying infants and their families.

Sample, Design, and Methods. Neonatal intensive care nurses were recruited through the online membership discussion boards of the National Association of Neonatal Nurses. Participants were asked to access an online survey link and provide a written narrative describing an end-of-life care situation in which they experienced strong emotions. Demographic data also were collected.

Findings. Narrative analysis revealed many affective responses, but three were the most frequent: responsibility, moral distress, and identification. Feelings of responsibility included (a) a commitment to deliver the best end-of-life care possible, (b) professional inadequacy, (c) disbelief, and d) advocacy. Feelings associated with moral distress were quite common and often related to conflicts between nurses, physicians, and families. Nurses reported feelings of identification with families of dying infants through (a) sharing their grief, (b) forming excess attachments, and (c) experiencing survivor-like guilt.

Implications. Nurse educators are encouraged to discuss more extensively and perhaps through the use of simulation, the positive and negative emotions that may be experienced by nurses who are involved in end-of-life care situations. Nurse leaders are encouraged to promote supportive environments in NICUs and ensure debriefing opportunities for nurses who have recently cared for a dying infant. Significant associations, such as NICU nurses not perceiving their EOLC education as being helpful in providing that care clinically and the percentage of NICU nurses reporting the presence of an end-of-life care policy in their units of employment, also merit further examination.

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